PARENTS OF CHILDREN with disabilities have said they are “frustrated” trying to access public services – and plan further protests to highlight the issue later this month.
The Journal and investigative platform Noteworthy spoke to a number of parents who described a “constant fight” to access services with many resorting to private care – sometimes also oversubscribed – to avoid the long waiting lists of the public system.
HSE services for children with disabilities have undergone changes in recent years – with new local networks across the country finalised as of last December.
However, at least one-quarter of the staff positions in these network remain unfilled.
Parents are still struggling to access necessary services for their children despite HSE promises that the new network would help rather than hinder. The HSE said it is “acutely conscious” of how the demand for children’s disability services impacts on families, but some families say they feel ignored by the health service.
Minister of State for Disability Anne Rabbitte said the Progressing Disability Services for Children and Young People (PDS) programme is “not working” and that she is “trying to fix it”.
Speaking at a meeting of the Oireachtas Committee on Disability Matters yesterday, the minister said she takes “full responsibility of where this policy has failed”.
HSE CEO Paul Reid said there have been “huge failings” in communication, engagement, levels of empathy and inconsistencies across different community health areas.
Minister Rabbitte, Paul Reid and officials from the HSE and Department of Health are currently working on a roadmap to “bolster” the PDS programme. This will be finished in the coming weeks and shared with parents.
‘Our children are just neglected’
A recent survey found that more than half of children with disabilities were not in receipt of any service or therapy.
Many parents surveyed by Inclusion Ireland earlier this year said their child spent a significant time on a waiting list for services. 85% said they have waited or continue to wait for over a year.
Amy Deegan’s son Mason was diagnosed with autism when he was two years old after a nurse noticed he wasn’t hitting some of the usual milestones.
“It just seems like everything is a fight,” Amy said, speaking from their home in Wexford. “You can’t get assessed by the HSE, then when it comes to school you have to fight to try and get them a place, then when it comes to the services that they’re supposed to get that’s another fight, and then when they turn 18 the adult services are non-existent.
“It’s not just one thing that’s failing, it’s the whole way through the journey. It’s just a big fight.”
Mason turns five next month. Aside from a meeting with a physiotherapist and a speech and language therapist in the early days of her son’s diagnosis, she has mostly turned towards private care for Mason.
“There were some weeks where I was spending €80 on speech and language and €80 on occupational therapy, so €160 a week just to get him going,” she said.
A Domiciliary Care Allowance is available for children aged under 16 with a severe disability. This is a non-means tested payment of €309.50 per month. Amy said this covers part of these kinds of costs but it doesn’t go far enough.
“It’s nothing to be sniffed at either, of course it’s not. But it’s €309 a month. If you’re paying €160 every week, it’s not going to get you far. When you do go private as well, the initial assessments for speech and language can cost €200 and the same for occupational therapy before they even have a session.”
The Progressing Disability Services for Children and Young People programme was established more than a decade ago by the HSE.
The plan essentially wanted to ensure children have access to essential disability services regardless of where they live. This is why the HSE set up new Children’s Disability Network Teams (CDNTs) – with 91 networks across the country linked with 96 HSE community healthcare networks. But staffing issues have resulted in a less than seamless transition since they were put in place.
The HSE’s Paul Reid said there is “significant work to do to make this better”.
He said the HSE and Department of Health roadmap for the programme will look at communications and engagement with families, reporting on CDNT activity and workforce planning among other issues.
The HSE is “progressing all available options”, he said, to get more staff in the CDNTs including thinking about new upskilling methods.
Independent Senator and security columnist for The Journal Tom Clonan criticised the HSE for having “failed” his 20-year-old son who has a rare neuromuscular disease.
“You have failed him. He has not received any meaningful physiotherapy, speech therapy, occupational therapy since 2011,” he told yesterday’s Oireachtas committee.
“The obstacles that you put in the places of families like mine are an insult added to the injury you’ve already inflicted. You are inflicting harm on our children.”
A number of TDs and Senators criticised the failings of the system and the many families that have contacted them in relation to lack of services.
“I think this situation has gone way beyond the point of us sitting around, saying it’s a disaster and talking about what a disaster it is,” Social Democrats TD Holly Cairns said.
It’s a breach of peoples fundamental human rights, and it is literally ruining people’s lives.
Green Party TD Patrick Costello said parents are being forced to “fill the gaps in services themselves”.
Parents are “emotionally, physically and mentally falling apart because of the strain that has been put on them”, he added.
Amy Deegan wrote a complaint to the HSE about the delays to accessing services and lack of support for her son.
She received a letter from a HSE complaints officer in March. This letter said Mason was supposed to have a new key contact assigned to him under the new CDNT in their area. This contact meets with the family and arranges services. The letter said a key contact had been assigned, but that this worker had since left the network.
The letter further said there was no capacity at that time to assign a key contact for Amy’s son due to staffing shortages in the CDNT.
There is no occupational therapist at the Enniscorthy CDNT and two of the four speech and language therapist positions were unfilled, the letter said.
It is understood these positions remain vacant but a HSE recruitment process is active and ongoing.
Census reveals high vacancy rate
An average of 28% of staff positions in CDNTs across the country are unfilled, according to a CDNT staff census and workforce review undertaken in October 2021, released in response to a parliamentary question by Sinn Féin’s David Cullinane recently.
This found that CHO5, which covers the Southeast, had the highest vacancy rate – at 33%. However, a similar level of vacant posts was found in most areas, with only three of the nine CHOs having vacancy rates below 30%.
The census also broke down vacancies by CDNTs and found that of the 91 CDNTs, 39 – over 40% – of them had a vacancy rate in excess of 30% of their WTE. Limerick South City had the highest, at 88%.
Therapist disciplines recorded the highest vacancies, with occupational therapists and speech and language therapists having the most unfilled approved whole-time equivalent (WTE) posts.
Vacancy for administration positions had one of the lowest vacancy rates – 13% – with CHO4 (Cork/Kerry) having 1% (0.16 WTE) of admin roles vacant. The same CHO had 21% of overall positions vacant.
The main reason given for vacancies was unfilled posts (70%), followed by paid maternity leave (14%).
This census last year said 524.5 vacancies existed across the 91 CDNTs. Minister of State Anne Rabbitte said yesterday that an additional 190 posts were added on to teams last year, so that actual figure for unfilled posts is 714.
Noteworthy reported in March that none of the 91 CDNTs are fully staffed. This was following a Joint Oireachtas Committee where Bernard O’Regan, the HSE’s Head of Operations Disability Services, said that the HSE has “an average vacancy rate of about 25% across teams”.
When asked about the ongoing vacant posts, a spokesperson said that “the HSE experiences ongoing challenges recruiting staff across a range of disciplines and grade”.
The HSE spokesperson said the health service continues to explore a “range of options” to recruit staff and collaborates with the CDNT lead agencies to progress recruitment initiatives.
Amy said her and other parents are “trying to do everything for our children now, because the HSE don’t”.
Our children are just neglected, that’s it at the end of the day. They are just being neglected at this point.
‘The PDS model could improve over coming years – but we don’t have years’
Down Syndrome Ireland, as well as providing support, training and education to its members – raises awareness and lobbies on issues facing its community. It surveyed families late last year to quantify the gap in services children with Down Syndrome were experiencing and has presented the findings to the Joint Oireachtas Committee on Disability Matters.
Barry Sheridan, CEO of Down Syndrome Ireland, told Noteworthy, “Across the board, we’re seeing a really poor implementation of Progressing Disabilities in terms of meeting the needs of people with Down syndrome.
“While the Progressing Disabilities model could improve over the coming years, we don’t have years. We have children now who haven’t had any access to any therapy and we’re concerned about those children and their opportunity to live their life to their full potential.”
Gillian Phelan’s daughter Elliah is three and a half years old. They live in north Dublin and have experienced a drastic change in the provision of services since they were moved to a Child Disability Network Team from their previous early intervention service under the PDS model last year.
We went from having speech and language, physiotherapy, occupational therapy, regular eye checks and a specialised paediatrician (all under one roof) to two Zoom calls in 18 months with a speech and language therapist who has yet to even meet my still pre-verbal 3.5 year old daughter. How is this progressive? It’d be a joke if it wasn’t so serious.
A large number of families who have a child with Down Syndrome spoke of similar frustration and disappointment in their experiences with Progressing Disability Services.
Caroline Rodgers is mum to Siún; they live in south Dublin.
“The services have been good – when Siún has gotten them – but the communication has been horrendous, with appointments being cancelled without us being informed, group sessions cancelled where I had to be advised by another parent, no responses to phone calls,” she said.
‘It’s the accessibility of services that is the problem, not the disability’
Claire Mulligan lives in Cavan and is the mother of 15-month-old Bobby.
Bobby has many complex challenges, Claire told Noteworthy, and has overcome a lot in his short life so far – but is now facing another to access what he needs to reach his full potential.
Claire described the change in services for her son from his early weeks to now: “For the first six weeks of Bobby’s life I was completely overwhelmed with appointments from the early intervention team in Cavan. Week two of Bobby’s life I was visited by his social worker, occupational therapist, physio and SLT (speech and language therapist) and to be honest don’t remember any of it.
“Bobby spent a stint in hospital and as a result ended up on an NG tube (nasogastric tube that carries food and medicine via the nose to the stomach) full time and a CPAP machine at night (to help breathing) and only after talking to other mothers was I told I should be entitled to some nursing hours at night through the HSE.
“I contacted his social worker and when I queried it she advised she would call out and go through the forms with me. After completing the forms she asked me if I’d considered counselling – I told her I didn’t need counselling, that I loved my son unconditionally and all I needed was someone who could help me with his NG tube and CPAP at night.
“The first application was rejected I asked on what grounds and never got an answer. With the help of a local TD and numerous calls Bobby was finally approved 22 hours of nursing care a week.
“Sadly it’s the accessibility and lack of experience that’s the problem, not the disability.”
Bobby’s service provider hasn’t changed under the PDS transition; however, Claire has noted that “since October last year things really have taken a turn and slowed down. Although Bobby needs to be seen by his physiotherapist and SLT they just aren’t available or haven’t the capacity to see him”.
She added: “Sadly they are stretched and as frustrating it is for me, I’m sure it is for them as well, but, hey, I’ll keep ringing, emailing and fighting in the hope someday he will get the services he deserves and the services don’t fail him.”
Maria Martin is four years old and lives in north County Dublin. Her mum Edel told Noteworthy that Maria hasn’t had any early intervention services in almost two years.
Edel describes her experience with her original provider, St Michael’s House, as “great”, that Maria had an SLT there and “an an amazing lady as our home teacher for a couple of sessions, but that has all been swiped away with the change”.
Under her new provider, in a new CDNT, Edel says Maria has received no support nor services.
“Anytime I call or email I get the same response that, ‘Maria’s file is open and active’. There has been no assignment of a key worker or any direct contact person for Maria, her file just seems to be hanging in limbo!
“I feel like such a fraud of a mother accepting this for Maria. She is one of four children, an older sister and a younger sister and a brother, and there is no way I would ‘have’ to accept this for them.
“The whole setup is so discriminatory, the stress it has put parents and families under is immeasurable. After no services due to a pandemic which no one could control, hadn’t our kids suffered enough? Hadn’t this whole re-organisation waited on the back burner long enough that it could have waited for another while instead of having the kids that suffered the services cut due to the pandemic, suffer the reorganisation now too?”
‘Is the objective no longer to make the child the best version of themselves?’
All of the parents we spoke to expressed pain not just at the lack of services, but a sense of hurt at the perception that their children were being sidelined by the new system.
Ciara O’Hanlon, whose six-year-old daughter Seána has Down Syndrome, said: “Progressing Disability is ‘needs based’. That is subjective. However, where does the HSE keep the promise to make the child into the best version of themselves? Is that no longer the objective?
“I am also concerned about losing the expertise built up in the old system where clinicians became subject matter experts in different disabilities, like intellectual disability, physical disability or autism. Clinicians are now generalists and expertise is being lost.”
Brendan Maher, speaking from Kildare, said that some services his two year old son has received have been “excellent” but that, as with other families, the access to services can be “woeful”.
However, Brendan believes “the real problems have yet to appear” and has noted: “As he gets older, the challenges to access services from the community to schools get so much harder.” He is concerned that this situation will continue: “With the heavy debt inflicted on Ireland by successive governments, cutbacks and tapering of services (you can call it or relabel community services any way you want but it is just that), coupled with the mind-boggling amount of middle management in health care teams right across the board, how can services be streamlined to access?
“[Children] have no voice to speak up for themselves so as their parents we must. By God, I will fight for my son so that he can live a meaningful life and that he gets a chance to fulfil his dreams like anyone else.”
‘I don’t need your apologies, I need services’
Eight year old Jamie was diagnosed with autism a month after he turned four.
For half his life, his mother Emma said it has been a “constant fight” to access services through the HSE. She said she went from knowing “almost nothing about autism” to feeling “like I have a psychology degree myself”.
“I think altogether in four years, we’ve had six sessions of speech and language therapy and we had one OT [occupational therapy] assessment. And that’s basically been it,” she said.
“I feel like everybody is frustrated. Parents are just left on their own to deal with all of this, and become their [child's] psychologist, and become their occupational therapist, and become their speech and language therapist. Children are definitely being left behind.
“My son is definitely being left behind.”
There is no one specific intervention or service that works for all autistic children, something the new networks for children with disabilities aims to address. Emma experienced this when her son was sent for speech and language therapy.
“Jamie is extremely social,” she said.
“So if they brought him in for speech and language with one or two other children and taught them things like how to interact with each other and how to do social conversation and how to take turns in conversations and how to listen to each other.
“What I find is that speech and language therapy tends to be extremely clinical settings, with pieces of paper and pictures and exercises. And I can only speak for my own son, but he doesn’t interact well with that. If you want to get him, [you need to] make everything into a game.”
Jamie was in a regular school with a special needs assistant until he saw a clinical psychologist through a private service.
“She did a full reassessment and said he needs an autism class,” Emma said.
“We got lucky because a place opened in the autism class in his school and he’s been in there now since January .”
It emerged last week that the government proposed opening five education centres for children with special educational needs in Dublin in September.
This is an emergency measure in response to a shortage of appropriate school places. It was met with criticism from parents and stakeholders who called it regressive.
Stakeholders have been meeting with Department of Education officials this week and autism charity AsIAm has called for clarity on the matter.
Emma said she tried to access public disability services but was told by the local team that there wasn’t sufficient staffing to provide the services for her son.
She said this team apologised for these shortages.
“I don’t need your apologies, I need services,” she said.
“I feel like it’s just a list and they’re checking a list and they’re not looking at the human behind the list,” she said.
“My son is incredibly intelligent and there’s so many things that he can do in life, but obviously with autism he struggles.
It’s about teaching him how to overcome those struggles to help him better in life so that his strengths can be built on and that the things that he finds difficult don’t hold him back.
Families held protests in Dublin, Cork and Wexford a few weeks ago, calling for improved services for children with additional needs.
Rachel Martin, organiser of the protests, said she is calling for more accountability from the HSE.
Her eight-year-old son has been without care under the public system for two years now.
“He’s had no intervention. It was recommended that he had psychology, OT [occupational therapy] and a speech and language follow-up and we’ve had nothing,” she said.
She criticised the new CDNTs and the lack of proper staffing.
“We’re not seeing a workforce planning strategy, we’re not seeing massive recruitment campaigns, we’re not seeing any kind of progress.
“We’re seeing small campaigns here and there but I think until the teams are fully staffed and they really establish why they’re not able to retain staff, I don’t think we’re going to see a change.”
The group is holding further protests at 2pm on 11 June outside the GPO on O’Connell Street in Dublin, on Grand Parade Street in Cork and in Enniscorthy, Wexford.
HSE ‘acknowledges the challenges’
In terms of why disability services for children needed to change, the HSE said that services were developed in an “ad hoc way across the country based on local needs”.
“Many organisations provide services for children with a particular disability only. This means that in one area, there may be excellent services for some children with a particular diagnosis and little or no service for children with a different diagnosis,” the HSE has said.
Children with the same diagnosis might require a very different amount and type of care.
This, the HSE said, is why children’s disability services were changing from diagnosis-based to needs-based so that all children with a disability or developmental delay have access to the right service based on need.
A CDNT is made up of health and social care professionals providing services for a specific geographical area.
The HSE also said specialist services will be developed to work in conjunction with these CDNTs and primary care services to help children with very complex needs.
In a webinar last year, Minister for Disabilities Anne Rabbitte said the PSD Programme “will ensure that children with disabilities and their families have fairer access and clearer pathway to services”.
A spokesperson for the Department of Health said the minister has “in recent weeks engaged with the HSE at CHO level to establish the difficulties being encountered in the delivery of disability services and to explore a range of potential solutions”.
“The meetings have been extremely positive and instructive and Minister Rabbitte looks forward to continued engagement with the CHOs, as she seeks to enhance services for those with disabilities and their families,” the spokesperson said. The meetings were attended by the department and senior CHO officials.
A HSE spokesperson said the health service “acknowledges the challenges in meeting the demand for children’s disability services and is acutely conscious of how this impacts on children and their families”.
It said 190 posts have been allocated this year to Children’s Disability Services in addition to 185 posts in 2021.
This is aimed to support the “implementation of family centred services” in CDNTs.
But Emma said she and other parents “feel we’re just being ignored” by the health service.
“Everyone’s story is different. And everyone comes from completely different backgrounds. But I feel like everybody’s level of frustration is the same. It’s just complete frustration with the lack of any information or help or support at all.”
This article was written by The Journal’s Orla Dwyer with additional reporting and data from Maria Delaney and Susan Daly of Noteworthy, the investigative platform of The Journal. It is the final part of our DELAYED DELIVERY series on the rollout of Progressing Disability Services.
This work is co-funded by Journal Media and a grant programme from the European Parliament. Any opinions or conclusions expressed in this work is the author’s own. The European Parliament has no involvement in nor responsibility for the editorial content published by the project. For more information, see here.